For many people, “palliative” can be a bit of a dirty word. A lot of people associate palliative care with death, however, palliative care is much broader than end of life care. I believe the stigma attached to palliative care is derived from a natural anticipation of grief and fear of loss but is exacerbated by a lack of understanding around the meaning and process of palliation. Today I’d like to dive further into this and explain how the goals of care change the way we manage dysphagia and the role of the speech pathologist in doing so.
What is palliative care?
Palliative care is the model of care provided to a person and their family when they are diagnosed with a life-limiting or terminal illness that has little to no prospect of cure. It is both patient centred and family centred, as required. The person may still be undergoing treatment during this time however the goals of care are more focused on quality of life. The model of care includes medical, physical, mental-emotional and spiritual support to both the person and their loved ones so that their lives together can be optimised on all fronts and the person’s prolonged as much as possible. This is because the person may be expected to live on for quite some time yet, however, knowing the prognosis, is approaching care with more intention and awareness of the situation.
What are the goals in Palliative Care?
Some examples of goals within a palliative care model include:
Relieving long-term pain and discomfort
Modifying the home to support independence
Counselling and grief support
Continuing to participate in cultural or spiritual practices
Discussing future care needs
Meeting with family members to discuss other sensitive issues
Some examples of Speech Pathology goals within a palliative care model include:
Sharing meals with family and friends
Going out to food establishments to socialise
Participating in spiritual practices involving food e.g. communion.
Reducing the risk of choking and aspirating when eating and drinking with acknowledged risk (EDAR)
What is end of life care?
End of life care is a specific part of the palliative care process that occurs in the final few weeks or days of a person’s life. This is often considered the terminal phase of care or when a person is actively dying. Rather than prolonging life, the services are often aimed at comfort care for the person and bereavement support for the family. This phase can be provided in multiple settings including the home or residence, respite, hospital and hospice.
What are the goals in End of Life Care?
Eating and drinking comfortably
Relieving and limited acute or increased pain
Managing energy levels to engage in meaningful activities
Counselling and grief support
Continuing to participate in cultural or spiritual practices (as above).
EDAR
Recently, we spoke about EDAR which is a poignant topic when it comes to palliative care. It’s not unusual for a person to EDAR during the palliative stage of care, although, noting that there is still the aim to prolong life, it is likely that strategies are in place to mitigate risk so as not to risk deterioration through a choking or aspiration episode. During end of life care, it may be that a person is provided with foods that bring meaning and joy however in a way that offers them as little pain and discomfort as possible. On this note, EDAR during end of life care does not necessarily mean a regular diet and thin fluids. This is why Speech Pathology input is so important through these stages of care to support the individual and their family as their goals change in line with their clinical presentation or situation.
One of the key areas of impact that The Fourth Place is focused on is sharing meals with loved ones when swallowing needs vary between people. This is notably pertinent during the palliative stage where the terminal status of a person’s condition can seem like an elephant in the room and every shared moment together feels even more important than the last. Shared experiences through mealtime and food be it social, cultural, spiritual, celebratory or commiseratory are invaluable. Finding ways to share the same food and sit equally at the same table can be some of the most memorable and meaningful moments. This is where having access to foods that everyone can manage comfortably and safely can really change the experience and elevate the quality of time spent together, regardless of how much time is left.
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